Archive for July, 2010
I have often wondered if I have a motto. Certainly “don’t kvetch” would be a contender.
That is to say, it’s hard for me to write about the challenges of my current situation, without couching it in incisive analysis or wry humor.
But right now, I don’t have much of either.
I talked to my husband a bit and had a little cry. He lent an ear, but he too is weary. I tried a few friends I keep on speed dial and got sent to voicemail.
Maybe it’s self-pity talking, but I feel like everybody is sick of my cancer and is ready for me to move on.
Since my usual supports are not available, I’m talking to you, my dear readers. Here is my latest angst.
When people see me these days, they say two things. First: “Wow! Look at all your hair! You look great.” And, “How are you feeling? Are you getting back to normal?”
I feel obliged to try to explain how my life hasn’t just been put on hold for these past 9 months. Damage has been done. It’s not just picking up where I left off; it’s repairing all that has been broken.To make matters worse, I am not the same. My usual modus operandi of storming through and getting stuff done does not work. My energy is limited, my capacities diminished. I am drained by long term emotional and physical effects as well, as I contend with horrible body grief and continued pain from my surgery.
Some of my well-meaning friends listen compassionately as I try to revise the expected survival narrative of gratitude and relief at “being done.” Others reinterpret my story as a matter of time and patience, as if these are all that stand between me and my former self.
Maybe it was a bad idea, but I started reading and actually watching videos of what reconstruction (which won’t be for 18 months) will entail.
I will summarize for you here in one word:
Again in one word… my reaction?
I am having trouble seeing my way out of this current state. I feel rudderless and confused.
These are not emotions I am accustomed to in my previously focused and purposeful existence.
Update: I got an amazing response from this from CURE magazine. What a gift.
Tags: attitude, body issues, changes, coping, daily life, gratitude, identity loss, mental health, straight talk, survivorship
Posted in Survivorship, Wellness | 32 Comments »
The Empowerment Rally this past weekend at CTCA really inspired and humbled me. I got to speak on a panel with four other remarkable people and reflect on what it means to be a self-advocating patient and what medical care that considers the whole patient might look like.
(If you didn’t get to see it and have an hour, I thought it was worth watching.)
I know I participated, but honestly, I felt like a humbled spectator. Maybe it’s because I am not totally done with my treatment, but I felt like Dorothy in The Wizard of Oz, getting to meet magical people who will help me navigate a mystifying place and find my way back home. I started out in the alternative universe of CancerLand. Now I am in SurvivorWorld.
Can you see the resemblances? No, not really.
Looking across the panel and listening to their hard-earned wisdom, I saw a number of qualities my fellow panelists had in common. First, they shared a commitment to make meaning of their suffering by doing something –– reaching out, speaking up, creating alliances, constantly learning and sharing. All of us were there because of our use of social media in dealing with cancer and survivorship. Mel Majoros has an award-winning blog and a radio show that focuses on cancer. Jody Schoger blogs, bikes, and advocates for women with cancer, working with M.D. Anderson and LiveStrong. Matthew Zachary started an organization called I’m Too Young for This that organizes and champions the underserved young adult cancer community. Joe Bacal, a professional racer, reaches out to patients and their families, giving them hope for a rich life after cancer.
While nobody sugarcoated their suffering or stifled their outrage about cancer as a disease and some of the indignities of treatment, they all manage to stay positive about life, whether through humor, doing what they love in the world, being with the people they care for most. There was a spirit of adventure and determination they shared.
Survivorship is a relatively new phenomenon. In the 1930s, fewer than 1 in 5 people survived a cancer diagnosis. In the 1940s, those numbers improved to 1 in 4. As recently as the 1960s, survivorship rates were only 1 and 3. Today it is about 1 in 2.
We don’t have a lot of role models. We can’t all be Lance Armstrong. Besides, every survivor has different issues that they face. As I said during the round table, we are more biologically similar than psychologically and socially similar. Treatment, if we are fortunate, has a timetable and an end. There are known pitfalls and ways of coping. Survivorship is much more varied and uncertain.
Undoubtedly, it is a blessing to have the chance to walk in SurvivorWorld. But along with the beautiful emerald castles and small people bearing lollipops, there are dark forests watched over by wicked witches and flying monkeys.
It really helps to have some good pals at your side. And for having a chance to meet a few, I am grateful.
Tags: attitude, changes, coping, courage, daily life, education, gratitude, hope, identity loss, social media
Posted in Media, Treatment | 2 Comments »
Please join us online tomorrow (July 23) at 2:30 Central Time, as the CTCA introduces its model of patient-centered care. I will be on a panel, along with fellow survivors Joe Bacal, Mel Majoros, Jody, Schroger, and Matthew Zachary, to see and discuss the potential for this new treatment system. To participate, link to http://www.livestream.com/cancercenter
Posted in Media | 2 Comments »
I just had my 4 month follow up with my surgeon. At my last oncology appointment, my doctor told me that she would recommend at least a year if not longer before I get reconstruction. Like a devious child, I had wanted to play one doctor against the other, hoping that my surgeon would wave his hand and say, “No need to wait that long! You can get ’em sooner that that!”
No such luck.
He says that I will only be 80% healed a year after surgery. The radiation sets me back about another 6 months, so he recommends I wait at least 18 months.
Eighteen months with no boobs? How am I ever supposed to feel normal in that time? Every time I undress, I am confused all over again at the appearance of my body. I don’t let my children see me naked. I don’t want to swim because I either have to flaunt my concavities or deal with re-stuffing my prostheses. Not to mention the ordeal of the locker room change.
My son calls my fakies my “inconvenient breasts.”
I have no idea where he came up with that name, but it’s spot on.
Well, if I am going to have to live with these for the next year and a half, I might as well get used to them.
10 Good Things About My Inconvenient Breasts
1. No more tedious breast self exams.
2. Jogging bra angst — gone!
3. These forms are hecka easy to fill out. Just draw two giant X’s.
4. More eye contact from men.
5. People can play with my boobies while I rest peacefully in the other room.
6. No PMS soreness.
7. Can keep my shirt on AND flash. Think of the potential for beads at Mardi Gras.
8. No risk of wardrobe malfunction in the freezer section of the grocery store.
9. Save a ton of money on lingerie.
10. Oh yeah, Andy and Justin? Well, I really do keep my junk in a box.
Tags: appearance, attitude, body issues, boobs, changes, coping, daily life, grief, identity loss, mental health, silver linings, vanity
Posted in Humor, Treatment, Wellness | 9 Comments »
I had one of those days. My husband has been out of town since Sunday, so it was Day 3 of being solo with the kids. I have a deadline at work, but the babysitter canceled five minutes before she was supposed to arrive, leaving me in a lurch. My girls were at each other’s throats. My toddler son backslid on the potty training, deciding that the toilet was for people who did not have better things to do. My daughter’s friend may have broken her wrist playing in our creek. And on and on it went.
Everybody has days like this, right?
The rawness of survivorship –– and the novelty of it –– cause the challenges of daily life to weigh more heavily. It’s hard to take things in stride when you are just getting your stride back. It’s a strange time, not just because I’m trying to figure out my new pace and rhythm, but because of where I am in life.
Many of my contemporaries are struggling with the Midlife Existential Question: So this is the life I am going to live? We have to make our peace with the compromises, the disappointments, even the warts-and-all realities of the dreams we have realized. For a midlife cancer survivor, the angst has a slightly different flavor: So this is the life I fought so hard for?
Don’t get me wrong. On most days, I love my life. But I can see how depression is common in cancer survivors. That slight shift in the Midlife Question makes a big difference.
Tags: attitude, changes, coping, daily life, mental health, survivorship
Posted in Wellness | 10 Comments »